Severe brain condition, but not disabled enough for pension

I have worked with the NewsMail since January 2012.
I started out as the secretary before discovering a passion for sharing people's stories.
I took on the role of a reporter in 2014 and haven't looked back.
I enjoy meeting new people and hearing about all walks of life.
If you'd like to share your story, give me a buzz or shoot me an email.

A BUNDABERG mother says her son's life is hanging in the balance after he was denied a disability pension.

Jenny Page's son Luke Johnson has 14 lesions on his brain, which cause seizures and memory loss.

The seizures can come at any time and cause Mr Johnson to black out or behave uncontrollably.

As a teenager he was a keen soccer player and very active, a typical outgoing boy.

But at 16 he had a number of seizures which sent his life spiralling in a different direction.

He was diagnosed with cavernous malformations, called cavernomas, on his brain.

The condition is a vascular abnormality of the central nervous system that consists of cluster of abnormal, dilated vessels.

Mr Johnson said the cavernomas have limited his life and fears seizures coming at any time.

The 26-year-old is not able to have a licence or live independently because of the condition.

"I want to be a normal person, but at the moment I can't be," he said.

"I don't go anywhere alone, I feel isolated."

He was placed on a disability pension in 2006 and relies heavily on support from his mum.

In 2007 he had his first brain operation and is likely to have a second this year to remove more of the larger lesions.

In a review of the disability pension about five year ago, Mr Johnson was rejected and he was placed on a New Start Allowance.

The change of payment took about $300 a fortnight away from Mr Johnson and he says it cost him his independence.

"Mum has to take time off work to take me to Brisbane to see the doctors," he said.

"I can't even help pay the bills here.

"No one will employ me because I'm a liability."

His mother said the condition affects his brain and she's at a loss to why the department took the disability pension off him.

"My son's life is hanging in the balance," she said.

"I don't understand how they can say it's not severe enough, it's not one or two of these things, it's 14 and they aren't curable.

"The only way his condition will change is if they give him a brain transplant."

Mr Johnson takes medicine used for epilepsy, which helps, but says it's still like playing Russian roulette as to when the next seizure will come.

"I just don't understand why they (the department) don't understand, from what doctors have written, they can't see how serious it is," Ms Page said.

"Luke never wanted to go on disability at his age.

"But he doesn't have a choice, this is something he can't get rid of and can't control.

"He may have a seizure and he may die in his sleep, how much more serious do they want it to be?"

Response from Social Services

THE NewsMail asked the Department of Social Services for comment as to why Luke Johnson's pension review was denied.

A department spokeswoman said due to privacy, she was unable to provide details or comment on individual cases.

However, she was able to give general information.

The spokeswoman said the disability support pension was designed to give people an adequate means of support if they had a permanent physical, intellectual or psychiatric impairment which attracts at least 20 points under the Tables for the assessment of work-related impairment for Disability Support Pension.

Mr Johnson said when assessed by the department, he was given a score of 10 points.

To be eligible for the DSP, the person must also be assessed as being unable to work for 15 or more hours per week, for at least the next two years.

Both Mr Johnson and his mother believe he is not able to work as the seizures may strike at any time.

The spokeswoman said people who had a claim for DSP rejected could apply again in the future if they felt that their level of impairment had increased.

The review system is designed to ensure correct decisions are made in accordance with legislation in the Social Security Act 1991," she said.